You Must Be At Least This Tall To Ride This Ride …….

You Must Be At Least This Tall To Ride This Ride …….

The last 5 years have been a roller coaster; some days or weeks the ride is more intense, rougher than […]

The last 5 years have been a roller coaster; some days or weeks the ride is more intense, rougher than others. You get used to it to a certain extent, but you just can’t be prepared for some of the really big drops.

When your loved one is living with stage IV, or metastatic breast cancer, you know intellectually that the day is coming that their treatment will fail, the disease will progress, and they will need a new treatment and that is the best case scenario.  With only about 22% of metastatic breast cancer patients living past the 5 year mark, you know the days are numbered and that each progression and failed treatment crosses days off the calendar. We’ve been through it 3 times already. That day is always coming. That’s the nature of the disease. Sometimes there are signs and sometimes there aren’t. It doesn’t seem to matter. When you get the news, it takes you out at the knees.

We just got that news. Again. My Mom’s treatment failed. Her disease has progressed. Again. I’ve known for 6 weeks and typing the words, staring at them on my screen hurts. She’s been on this treatment for 10 months. Each time, the treatment fails faster. That scares me. When the treatment fails, the family seems to go through a fast forward version of the ride they took the first time they found out that their person has stage IV breast cancer. You can’t believe it, even though you knew something was wrong. You might start bargaining with whoever about whatever you believe in; especially while you wait to find out the extent of the progression. You hope for things that sound crazy to a healthy person or healthy family. Meaning – you hope it’s “just” more progression in the same places and it hasn’t infiltrated a new organ. You go through every worst case scenario to try to prepare yourself. You might feel numb, or hopeless or angry.  I’d guess, based on the gamut of emotions I’ve run, that all reactions are normal.

For two of the past six weeks I had what I am calling a cancer tantrum. I completely checked out of the cancer world I am normally highly engaged in, I didn’t read, I didn’t make calls, I didn’t dig, I didn’t try to find ways to help my Mom. I retreated.

For those two weeks I walked around with a weight on my chest, in my chest. When I tried to take a deep breath, I couldn’t. I know what this feeling is now, since it’s not my first big drop on this ride. I know exactly what’s in there, weighing my chest down. It’s fear, anger, grief, exhaustion, frustration, defeat.  You have to let it out. You know you have to, but sometimes you are too scared to let a little bit out to relieve the pressure; in case you can’t stop it. Or you don’t have time to let it out. Like, you actually don’t have time. Those two weeks, like every week I was parenting the little boys, managing the business, and working on the projects with the corresponding deadlines. Add to it all, that letting it out is messy. I need to be alone when I do it. If I ever find myself alone, sometimes I am just too exhausted to go there. You can’t schedule letting it out. It doesn’t work like that.

So with no time or energy to let it out, I decided instead to put a stop to my tantrum and re-engage. I reached out to contacts on all sides of the drug wait times issue to see if there was any change or word on Ibrance, the drug we have been waiting literally forever for. We really want this treatment for my Mom because we feel that she deserves the best options, the most promising treatments.  I needed to know for sure that it wasn’t possible before we started her on the other treatment her Oncologist wanted to start.

Long story short, what I did find out is that we might finally be able to access Ibrance for her, funded by the pharmaceutical company; in this instance, at this time.  And that it would take some pushing, pulling, arguing and name dropping to get it. There are so many factors, so I don’t want to bore you with the details or worse, oversimplify the issue. I will just say that it was a maybe and we had never ever been this close to getting it for her before. There’s a catch because there always is, but I didn’t care! Maybe was all I needed to hear to fully drag me out of my tantrum. Things happened fast after waiting, working and hoping for the past 2 years. It took up the past 4 weeks while we sorted our way through getting her approved to have the drug, coordinating that with the other drug, getting the other part of her treatment (radiation) set up, and working through it all with her Oncologist, the pharmaceutical company, and insurance.

I know that many people who will read this post have followed my Mom’s story and our quest for this drug for a long time now. So we wanted to be sure we share this news with you too. My Mom is starting Ibrance very soon! So soon in fact, that we have that incredibly valuable package in our hands! It will be a huge relief for us to see her finally start this drug. It’s something that I have pursued single mindedly for over 2 years. All because we want her to have the best options.

Sometimes those options aren’t available when patients need them and certainly not fast enough to keep up with the disease. Things need to change in the drug approval process in Canada and we will stay committed to working towards seeing that change because it’s not just this drug. It’s every drug that comes after it. Ibrance and the delay in getting it is a symptom of a system that is broken.

For those who have followed this part of our story we want to thank you for your support. It helped us keep going when there were times we wanted to give up on getting this treatment for her. To answer questions you are probably asking; this treatment is not a miracle…..it isn’t going to save my Mom’s life. Our hope is that she responds well to it, like so many others have, and stays stable with good quality of life for a year or two, or longer. And that in that year or 2 or longer there will be another promising drug like it and so on. That’s the best we can hope for at this point and we will take it.

I am so grateful for the people and organizations that we are connected to across Canada who are in some way involved in the metastatic breast cancer community and particularly the drug access issue. Every relationship one builds as a patient, caregiver and/or advocate takes time and energy to build and maintain, but they have immense value. I am reminded in how this all came together of the importance of telling your story, or your loved ones’ story. Tell it often, tell it in a memorable way. Keep that story front of mind for as many people as you can. When they hear of a clinical trial, change in access, or new treatment, you need them to think of your family. It won’t always be the right fit or the timing may not work, but the only way to know is to stay connected. The cancer tantrum will happen again someday, but I really needed this win to remind me never to stay disengaged too long. Drag yourself back to it even as a last ditch effort, even when you are close to giving up on something. Try again tomorrow.

For me, letting it out can happen now. I know that some of that darkness and heaviness in my chest can be balanced with a little relief, a little hope. Next time I know I might not be as lucky.  The high and the hope of getting Ibrance is almost as intense as the low and the heartbreak of the news of the progression.  As a family we are on this roller coaster now, and we have no choice but to stay on. So we will keep riding the highs and lows and and making the most of absolutely every moment in between.

~Carmen Powell

 

22 Comments

  1. Thanks for sharing. So happy to hear your mom is advancing in such a broken system. She is a remarkable woman who has raised 3 determined remarkable ladies. Great work being your moms advocate. Keep fighting the good fight.

    1. Thank you Kristen!!

  2. I am doing a happy dance this morning—thank you for the story and your family’s perseverance and continued strength in gaining access to treatments that will help Jody and the cancer community.

    1. Thank you Janet!

  3. Carm, this was such a powerful post, thank you very much for this! You inspire me and so many as we all hang on while we ride this crazy ride. We are all praying for Jody… and you are amazing!

    1. Thanks for the support, my friend…today and everyday!

  4. Thank you for sharing this news about the treatment for someone we love so dearly and fight so hard for a miracle in our prayers. She does deserve the best and she has three beautiful ladies that don’t miss a beat. Like grandma would say we need to keep on keeping on.

    1. Thank you Auntie! ~xo

  5. Your whole family inspires me, and you are all in my prayers every night. Thank-you Carmen and hugs to all.

    1. Thank you so much Katie!

  6. Thank you for sharing Carmen. Your words have painted such a clear picture for us. Think of you often❤️

    1. Thank you Jeanne!!

  7. Carmen …. please hug Jody for me. I think of her often and am glad to hear the latest.

    1. Will do Lavona! Thanks so much!

  8. Carmen, you are writing on behalf of all the daughters wanting to support their mom’s. You have the gift of articulation and the perseverance to advocate for not just your mom, but everyone’s mom. For that I am truly thankful and grateful for bringing the very human family heart and voice to the care and well being of women with MBC.

    1. Thanks so much Dianne!

  9. I did my Masters degree with your INCREDIBLE mom and was one of my very greatest mentors. Please tell her that I am thinking about her and I wish her strength in the upcoming weeks.

    1. Great to hear from you Alison! Thanks so much for reading and for your support!

  10. This is great news Carmen and a wonderfully positive post. Prayers and hugs to all of you.

    1. Thanks so much Karen!

  11. Jody is one of the most remarkable ladies I have known and had the pleasure to work with. She is not a person who gives up nor do her daughters.

    1. Thanks for reading and for your support MJ!

Leave your comment

Please enter your name.
Please enter comment.
Cart